Pediatric Epilepsy Research Foundation

The Pediatric Epilepsy Research Foundation (PERF®) is a physician-scientist-run grantmaking foundation with a single, coherent giving philosophy: fund early-career child neurologists and developmental pediatricians who are building collaborative, multicenter research programs in the U.S. and Canada. Founded in 2004 by Drs. Roy Elterman and Donald Shields using pharmaceutical royalties from vigabatrin's FDA approval, PERF has operated with a research-community-first ethos since awarding its first grant in 2010. Its nine-member board is entirely composed of pediatric neurologists and clinical researchers — people who understand the NIH funding pipeline from the inside — and every grant program is designed to address a specific gap in that pipeline.

PERF strongly favors researchers at established academic medical centers with institutional backing. Every major grantee in the portfolio — Child Neurology Foundation ($862,500 over 5 grants), University of Colorado ($817,576), Weill Cornell Medicine ($525,000), University of Michigan ($340,000), Emory University ($280,000) — is a recognized academic or clinical research institution. Essentially all giving is designated for RESEARCH purposes; there are no grants for general operating support, advocacy, or direct services.

The relationship progression follows a disciplined two-stage annual cycle: (1) a Letter of Intent submitted by October 30, (2) a full application due by April 15 of the following year, with award notifications by June 30 and funding commencing September 1. This means planning must begin at least 11 months before dollars arrive. There is no rolling or open application process — miss the LOI deadline and wait a full year.

For first-time applicants, structural prerequisites determine eligibility before merit matters. Career Development grants (Elterman, Shields) require active or junior Child Neurology Society membership. Infrastructure/Registry grants require a consortium of at least 3 academic institutions and a mandatory mentoring plan. The Bridge Grant targets researchers in the gap between a failed NIH R01 and resubmission, with tight eligibility windows. PERF's partnerships with CNS, AES, and the Child Neurology Foundation mean that researchers already embedded in these networks — presenting at CNS Annual Meetings, active in AES fellowships — are the ideal applicant profile. Cold approaches from outside these networks face a steeper path.

PERF's grantmaking database records 118 grants totaling $6,595,481 across the top grantees, with an average grant size of $55,894. This average blends small travel scholarships ($1,500) and prize awards (as low as $500) with substantial multi-year grants, so the programmatic grant levels tell a more precise story. Infrastructure/Registry grants run up to $300,000 over 3 years ($100,000/year). Career Development grants (both the Elterman and Shields tracks) pay $150,000 over 2 years ($75,000/year). Bridge Grants are $50,000 with a required 1:1 institutional match, making the effective total $100,000. The AES/PERF Fellowship is $50,000 for a one-year mentored research experience. SPARK Grant amounts are not publicly specified but operate in the same range.

Annual giving has fluctuated significantly: $844,487 (FY2020), $1,321,183 (FY2021), $2,376,817 (FY2022), $1,217,622 (FY2023). FY2024 giving has not yet been reported, but total assets grew to $35,151,181 — up from $32,948,389 in FY2023 — on revenue of $2,721,526. The giving variability reflects multi-year grant disbursements creating lumpiness, not strategic inconsistency. Revenue is almost entirely investment-driven: net investment income was $4,712,598 (FY2022) and $3,086,627 (FY2023). PERF received just $44 in charitable contributions in FY2023 — essentially zero. This endowment-only model means PERF is immune to donor pressure and fundraising cycles; grantmaking decisions are purely programmatic.

Geographic concentration leans toward Maryland (13 grants), California, Texas, and Illinois (10 each), and Minnesota (9). Maryland's lead likely reflects NIH-proximate institutions (NIH is in Bethesda). Since 2010, PERF has distributed more than $18 million across 65+ research projects — an average of approximately $276,000 per funded project when multi-year awards are counted as single units. The top 10 grantees account for roughly 65% of all tracked dollars, with the Child Neurology Foundation alone representing approximately 13% of total tracked funding. All disbursements serve research or research-adjacent purposes — there are no operating, advocacy, or direct-service grants in the history.

PERF's $35.2M asset base places it in the middle of its size-comparable peer group, but it stands apart from all peers in two structural ways. First, its grantmaking is entirely endogenous — investment income, not donations, funds every grant — making it unusually stable and predictable compared to foundations dependent on annual fundraising. Second, it is the only disease-specific funder in this peer group, with a defined population (children with neurological disorders) and a defined research modality (clinical and health services research, multicenter collaboration). Peers like Hopelab target broader youth digital health, and the Ricbac and Plumb trusts have undisclosed program priorities.

Among pediatric epilepsy funders specifically, CURE Epilepsy (not in this peer list, but a direct analog) and the American Epilepsy Society are the closest competitors for early-career researcher attention. PERF has differentiated itself by building a defined career development ladder (travel awards → SPARK → Bridge → Elterman/Shields → Infrastructure) rather than offering ad hoc project grants.

PERF's most recent public activity confirms a fully operational 2026 grant cycle. On April 7, 2026, three Spring 2026 SPARK Grant recipients were announced: Stephanie Brosius MD PhD, Natalie Katz MD PhD, and Jaclyn Martindale DO. On April 9, 2026, PERF offered travel scholarships for the Curing the Epilepsies: New Horizons Conference (June 8–10, 2026). On February 2, 2026, PERF co-sponsored Fellow Travel Scholarships for the Epilepsy Foundation Pipeline Conference with the Epilepsy Foundation and Epilepsy Study Consortium.

The most significant 2025 programmatic award was the Multicenter Infrastructure Registry Research Grant to David M. Ritter MD PhD at Cincinnati Children's Hospital for the TSC-FETAL project — a multicenter fetal evaluation and treatment program for Tuberous Sclerosis Complex. This is notable for two reasons: TSC is a rare genetic epilepsy syndrome (not general epilepsy), and the fetal/prenatal angle represents an expansion of PERF's typical clinical-research scope. In 2025, three Bridge Grant recipients were also named: Megan Abbott MD (University of Colorado), Caren Armstrong MD PhD (UC Davis), and Adam Numis MD (UCSF), each receiving $50,000. Five early-stage investigators received travel awards to the 2025 CNS Annual Meeting in Charlotte, NC under a pilot travel award program.

Leadership appears stable: Dr. Renée Shellhaas serves as President (compensated at $62,500 in FY2023, up from $25,000 in FY2022), with co-founders Drs. Elterman and Shields remaining active in officer roles. Karen McEwen serves as Executive Director. No leadership transitions or strategic pivots have been announced publicly.

The October 30 LOI deadline is the only gateway into PERF's grant cycle. There is no alternate submission window, no rolling review, and no mechanism to submit a full application without a prior LOI invitation. A well-crafted LOI should concisely identify: the specific grant track you are targeting, the research question or career development objective, the team and institutional affiliations, and your eligibility credentials (CNS membership level, NIH submission history for Bridge/SPARK). The LOI is evaluative — PERF uses it to assess fit before investing review resources in a full application.

For Career Development grants (Elterman and Shields), timing within your career arc matters. PERF defines eligibility as within 10 years of training completion, but the practical sweet spot is 2–5 years post-fellowship, when you have preliminary data but have not yet secured an independent R01. Lead with your mentorship team — PERF views mentorship as central to its research-pipeline mission, not an afterthought. The Elterman Grant welcomes both clinical and basic science approaches; the Shields Grant requires a clinical research or patient care component. Do not submit a bench science proposal to the Shields track.

For Bridge Grants, the application must explicitly document: the specific NIH R01 or CIHR Operating grant that was submitted within the prior 2 years and scored below the funding line; the reviewer concerns driving the resubmission; and your institution's commitment to a 1:1 cash match. PERF expects the bridge award to directly enable the resubmission — not fund parallel work.

For SPARK Grants, identify the specific K08, K23, or CNCDP-K12 you are resubmitting, state the primary reviewer critique, and connect your bridge work to the revised specific aims. Be explicit that you hold a faculty appointment at the instructor or assistant professor level.

For Infrastructure grants, name all 3+ consortium institutions in both the LOI and the full application, include a mentoring plan (explicitly required for all invited submissions), and frame the research around multicenter data infrastructure rather than single-site projects. Proposed research must be conducted in the U.S. or Canada. All applications are emailed as a single PDF to PERFCDG@gmail.com — confirm formatting before sending.